When I was approached to see Marty, an Age Song Community resident with Huntington’s Disease [HD], I wasn’t sure it would work because of the spontaneous movement that is associated with the disease.

Huntington’s disease is a disorder passed down through families in which nerve cells in certain parts of the brain waste away, or degenerate.

The most common form of HD is adult-onset Huntington’s Disease. Persons with this form of HD usually develop symptoms in their mid 30s and 40s which may include behavior changes including hallucinations, irritability, moodiness, paranoia, and psychosis. Abnormal and unusual movements [chorea] include facial grimaces, head turning to shift eye position, quick, sudden, sometimes wild jerking movements of the arms, legs, face, and other body parts, slow, uncontrolled movements, and an unsteady gait.

Dementia that slowly gets worse, including disorientation or confusion, loss of judgment, loss of memory, personality changes, and speech changes may also be associated with HD.

Additional symptoms include, anxiety, stress, and tension, difficulty swallowing and speech impairment.

Indeed, providing massage for Marty is a challenge .The spontaneous movement creates positioning challenges because the slightest movement of a limb can create a triggering effect throughout the body. It is also very difficult for me to understand his speech and his facial expressions may have nothing to do with the meaning of the conversation. I have to stay totally focused to really understand the emotional under tone of our sessions and to separate the symptom ology from deliberate animation.

In the 3 months that Marty and I have worked together however, the positive outcomes outweigh the challenges. Symptoms that include labored breathing, facial grimacing and body jerks relax as much as 50% during a 45 minute session. Sometimes a very deep calm appears and eases all symptoms for minutes at a time.

Our sessions are casual. Marty sits in a comfortable chair and stretches his legs over the side of the bed.
Sitting on a stool at the side of the chair, I prop his arms with pillows and work with his arms, hands, chest, neck and head. I work very slowly as to give the nervous system an alternative movement to follow. Ear massage has the most relaxing effect of all areas of the body. It appears to completely calm the nervous system.

Marty’s vulnerability and his willingness to be vulnerable is a precious gift. In “Gems Of Wisdom,” a book by the residents at Age Song, Marty writes,”With HD there is a lot of shame about the body and mind. They become the enemy, are misunderstood and disguise who I really am. People think I am drunk and laugh at me. My mother, brother and I became the butt of many cruel jokes. I now try to experience love and joy instead of despair.”

Communicating with the psychologist underneath the symptoms of HD is also a challenge that I am deeply grateful for. Marty’s  willingness to be exactly who he is, his willingness to be loved, and his willingness to be fully present is a sacred teaching. My professional boundaries are challenged. I am watching myself become involved. The heart is open.

I will keep you updated on our relationship.

I have been communicating with Ginger Peer, a practitioner in Virginia who is also working with someone with HD. I have posted her last e mail under comments. Please share any experience you might have as well.

Blessings,

Irene Smith   www.everflowing.org

I have personally been concerned at the push for practitioners to model after the medical model. This includes, technology over heart, technology over relationship, and separateness over the organic bonding of touching another human being. These are all the principals that cause burn out and fatigue of our health care professionals. This is not to model after.

My dear friend, colleague, mentor and massage industry icon, David Palmer, is concerned as well. In David’s November issue of his Touch Pro Newsletter he addressed this issue in an article that I think is brilliant and deserves to be circulated. Therefore, I am sharing the following article along with the discussion that followed. I feel it is vital to the health of the massage profession. I urge you to read it and join the discussion.

Blessings,
Irene Smith
www.everflowing.org

Recently I had the opportunity to facilitate an in- service in mindful touching for an Aging and Sexuality group at an assisted living community where I see clients. The participants in the group were considered high functioning residents, although in different levels of mental and physical health. This was my first experience with teaching residents within a community. I usually teach care partners.

There were six residents in the beginning. One gentleman seemed to feel overwhelmed with the topic and left before we started. Another gentleman became uncomfortable with the request to dialogue about the touching with his partner. The touching was easier than talking about it. He decided not to participate; however he stayed in the room. Residents were requested to touch their partner in a place on the body that had been designated a safe place. The time frame of holding the touch was one minute.

After the touching the person being touched was asked to tell their partner what made it feel safe to receive the touching. I use this format frequently to illustrate what deepens trust in a touch relationship. The responses were typically what participants usually share; eye contact, gentleness, slow approach, first acquiring permission, knowing the person beforehand, etc. The difference was the profound impact the touching made on participants. One resident shared that it was really different to be touched in a personal way. Others also spoke of how out of the ordinary it was to be touched by someone they knew in their community. We repeated this exercise 3 times. The last time the request was to stroke or massage the recipient and the time frame was 2 minutes.

Everyone shared from a deeply vulnerable place. The overall experienced was very personal Caring and intentional touching was something most in the group had not experienced in a long time. As a closure to the evening we held hands in a community circle. This was also a very meaningful experience for all present. It seemed that no one wanted to let go.

I was touched by the vulnerability and trust in this group and also saddened to see how alienated human beings can be from personalized contact not just from care providers but from those in their community.

I will go again in February and teach some structured touch so residents can continue to share touch with each other in a non threatening way.

I realized during reflection after the group that definite guidelines were needed for safe integration of the touch that the residents had received.

These are the re-entry guidelines I came up with: [ This is a work in progress.]

*We spent an evening touching. The touching may bring you in contact with emotions you have not felt in a long time. Its natural to feel vulnerable after a touch session. This may include feeling sadness, embarrassment, love, passion, frustration or depression. You may find it helpful to Talk to someone.Talk to your program coordinator, your chaplain, or someone else who can listen and support you. Write your feelings in a journal. Touch can take you on a journey through your life because it opens the heart.

*Touch opens the heart. You will feel bonded to your partner. You may feel that you are in love with them. Be gentle with yourself and know that when the heart opens it expands into unconditional love..not attachment. Loving and being in love are different states of being.

* Because you feel bonded with your partner you might be drawn to go up and touch them again. You must get permission. Please do not take it for granted you can touch them without permission. You must get permission each time you want to touch someone. Your partner may not feel like being touched. Do not take it personally.

*Touch is a basic human need. No matter what your age or circumstance it is natural to want and need to be touched.

I’d love to hear from you. Please share your insights and experiences on this topic.

Blessings,

Irene Smith

www.everflowing.org

A very good practice is to bring your awareness to the physical touching aspect of the following care giving tasks and procedures; feeding, dressing, changing, wound care, turning a patient in bed, brushing hair, etc. These tasks and procedures are touch sessions. They are opportunities for healing and comforting when mindful touch is performed.

Bringing a mindful presence into your physical touch can transform the experience of care for both persons in the caregiving relationship. Physical comfort; however is only part of the equation. The emotional support that may be provided by mindful touching offers a major contribution to the daily coping strategies in elder and hospice care.

Mindful touch may also convey a message of being cared for, being safe, of being worthwhile, and being connected to a greater whole or community, thus creating a sense of belonging.

The feelings of safety and of belonging to a greater whole help the aging or dying person to develop a more positive relationship with his/her physical body and in turn with the aging process. This helps to ease attitudinal symptoms such as anger, depression and fear that complicate the ability to receive care and contribute to the experience of discomfort

Easing these stressors, which contribute to the experience of discomfort, elicits mindful touch as a viable partner in controlling pain.

In some cases the aging or dying person will not have friends and family present to provide the kind of support that encourages feelings of emotional safety and nurturing. Mindful touch can serve as the missing family link by promoting these feelings.

Being our first language, touch provides a natural alternative method of communication when a person loses the ability to utilize verbal language. This eases feelings of helplessness for the aging/dying person, family and health care team thus providing a way of re-establishing hopeful relationships

Within the fabric of caring, touch is the integral thread that weaves the physical, psychological, and spiritual aspects of the fabric together. Bringing mindfulness to this organic gesture of human contact creates what is truly the essence of compassionate care.

Blessings,

Irene Smith

www.everflowing.org

One of the greatest components of my work with Dr. Elisabeth Kubler- Ross was being in the room with a hundred people from all walks of life including, clergy, physicians, school teachers, policeman, wives, mothers, nuns, psychologists, nurses, artists, and others and to witness the related woundedness of a society.

The realization was that trauma is not isolated to any special population. It is what separates us and it is what unites us.

In my daily urban experience I pass the lower middle class now homeless; the mentally ill who have no place to go, and elders stumbling down the street looking for something to hold on to.

Cancer, Alzheimer’s Disease , Parkinson’s Disease, HIV, MS, autism, PTSD, and other serious conditions are rapidly becoming the norm.

Trauma and illness are core factors to acknowledge as professionals in our current society.

During the Twin Tower attacks on 9/11 I was outside of Boston, in North Dartmouth, Massachusetts teaching a four day hospice course. The day of the attacks was our day to process grief. I thank God that I had the skills to be with 18 terrified students including one with family in one of the World Trade Center buildings.

We went right into our scheduled circle to debrief and share our grief, perform ritual, and mourn the present tragedy. I will never forget that day. No one left. All participants stayed to process their feelings and to support the rest of the community.

We ended the day by tenderly holding each other and with touch techniques designed for the fragile and the dying. Just a day in the life of a teacher and on that day, the perfect course for a day in the life of a human being.

The capacity for humans to serve one another when given the opportunity and the permission to explore their commonality is astonishing. The veil that separates us into special populations is being lifted. It is from this exposed commonality that I want to serve the educational institutions in our field.

I envision a classroom where students have the opportunity to share their personal stories in between technique development, and teachers who have the skills to listen. The special populations are in our classrooms.
.
It’s time to reevaluate what students need in core curriculum.

I look forward to your sharing on this topic.

Blessings,

Irene Smith www.everflowing.org

Although touch is our original communication, we are taught, as soon as possible, verbal language to replace touch and at the same time taught many conditions about the negative use of touching. It seems that during various stages of our development we learn more reasons why not to use touch than positive reinforcement for it’s value in our lives.

As professionals we learn that boundaries are primary to the professional relationship and learn the caution of becoming intimately involved with those who seek our care and counsel. We learn not to become emotionally involved.

As a care provider we are touching those in our care during vulnerable times. The heart is exposed. The core factor in the act of touching is the bonding that takes place; the connection between two beings. This connection coupled with the vulnerable heart is an emotional place.

Touch elicits emotion. To be fully present to the touch experience elicits our momentary emotional involvement, To separate from this feeling does not allow us to be fully present and authentic.

We as caregivers, have a double jeopardy when it comes to being fully present to this emotional bond during touch interactions. We have our early learned cautions about touching; some healthy and some unhealthy, and we have our professional boundaries. How then do we bring ourselves fully into the touching aspect of our caregiving relationships? How do we allow our heart to be present?

Being present in my touch relationships with clients requires me to be receptive not only to my clients experience but to my experience as well. When my heart is fully present so is love. When I feel love I also feel the conditions I’ve been taught about loving and about feeling love as a professional.

If I am going to keep my heart available then I have to be open to all the feelings I am experiencing. Sometimes I feel shame, sometimes embarrassment about feeling love. I can’t hide from these aspects of myself because I will be closing down to my experience. When I close down to my own experience I am no longer whole.

So , what to do? I try and observe what is going on inside of me and witness it with compassion.

I feel my grounding….my feet on the floor. I feel my center… breath in my belly and I exhale fully. I try and allow my body to be as comfortable as possible and feel the body that I am touching. I bring myself back to the texture and form and temperature of the body I am touching.

This grounding will sometimes allow me to discern between old information and current experience and allow me to respond from current information in the current moment.

Three components of Therapeutic Presence as described by Bugenthal [1987] are;
Being open and present to all parts of the client experience
Being open to all of one’s own experience as one is with the client
Being able to respond from the immediacy of that experience.[authentic]

Being authentic requires deep trust. I have to trust what I feel in my heart, what I sense through my body and trust my ability to assess clearly from this current information. I also have to trust that the person I am touching will receive my touch in the wisdom in which it is delivered, and with eyes open, I have to trust in the moment. Cultivating trust is the way to cultivating presence in the touch relationship.
Irene Smith www.everflowing.org

When I arrived I was told by the Nursing Director that a resident had died the night before. She had been with him all morning as staff and friends had participated in bathing his body and preparing him for his journey from the house.

All staff, including the nurses attending the in service, were asked to participate in the ceremony of departure. The body would be carried out shortly before the in service was scheduled to end, therefore I was asked if I could end a bit earlier than scheduled.

The door bell rang; it was time to come to the dining room for the ceremony.

Once there we formed two lines and a bowl of rose petals appeared. We passed the bowl around and all took a handful of petals. Then we were told the deceased wanted us to sing Amazing Grace.

While singing, two well dressed men came down the stairs slowly carrying a gurney with the deceased gentleman draped in a shroud, bringing attention to the serenity in his face. It could have been the streets of New Orleans!

As they passed through the dining hall between the two lines we sang as we sprinkled rose petals on the body.

There I was looking into the face of the deceased, someone I had never known, who didn’t know me, singing, welling up with tears, sprinkling rose petals and realizing that the sacredness of the moment transcended personal relationships.

This was honoring the cycle of life; the human spirit; human suffering and the profound ordinariness of this extraordinary morning.

As the gurney proceeded out the door and through the garden we began to take our places at the table; some with bag lunches and me looking in the fridge for leftovers.

The lunch was somewhat silent for a few minutes. We were digesting food for the soul. Our eye contact and quiet breaths together told the story of the blessed honor we had shared. Then, as if a bell had rung, the talk about the afternoon schedule began.

I finished my lunch and left to go down the street to see a client in another residential care facility.

As I walked outside I was aware of people walking fast; wearing black, and looking at their palms with plugs stuck in their ears. I had to be careful as everyone was in some kind of personal isolated state, connecting with life through cyberspace. The outside world suddenly felt empty.

I paused. Remembering the gentle aroma of rose petals, I expressed silent gratitude for my morning in the hospice.

Blessings,

Irene Smith www.everflowing.org

You may find yourself tempted to breach a client’s privacy with their friends or in written reports. It is very difficult not to share the courage, the spirit, the pain and the intimate moments
we share with clients. It requires constant discipline. I have to work at it all the time and make sure that my needs for support and for sharing personal feelings are taken care of. It is
when I am seeking validation that I am tempted to break a client’s confidentiality during or after a session.

Health care professionals are bound by HIPAA (Health Insurance Portability and Accountability Act) guidelines. Put into place in 1996, these guidelines protect patients’ health information.

As a private practitioner, these guidelines create challenges in gathering information to assess appropriate treatment choices for clients. Nonspecific information, such as how a client
is feeling that day or what sites or positions are contraindicated for massage, may be given. Specific information on diagnosis or prognosis may not be shared.

As a practitioner associated with an organization I am considered a member of the health care team and provided with all information needed to clearly assess treatment options.

As a private contractor it can be very difficult to receive adequate information. I am now finding myself in this position more often

Having always advocated to get as much information as possible; I now see that sometimes you just cant access the information you need. When this happens to me I go slow, observe, feel, intuit, and always air on the side of caution. This is with thirty years experience to draw from. In the beginning I advise to only see clients whom you have been given sufficient information.

Recently I became a member of an Integrative Wellness Team in an assisted living community. Last week I went to introduce myself to residents and staff.

Seeing a man in a wheel chair, I knelled down to have eye to eye contact. I asked if I could touch him as I introduced myself. He said yes and I touched his arm. We had a verbal exchange.

Soon after our exchange he came over to me and told me to make sure I never touched him without letting him know first because he was a Viet Nam vet and exhibited intense behaviors. He also let me know he was bi polar and that during a session he might change personalities.

I thanked him for his trust in sharing this personal information with me and let him know I was looking forward to possibly providing him with gentle touch.

I want to know physical symptom o logy, psychological behaviors; receptivity to touch; position, or site restrictions and precautions. This is sufficient information for me to feel comfortable receiving a new client.

I look forward to hearing your views and experiences with this very important topic.

Adapted from ‘Providing Massage in Hospice Care’ an Everflowing resource manual by Irene Smith

Blessings,

Irene Smith www.everflowing.org

These are constant questions for me in working with the dying. I have strong belief systems about how I want to die and what I want and don’t want in the process. Do these “don’ts” interfere with my ability to clearly hear my clients and act as a non-judgmental witness?

As an advocate of alternative medicine, I am a believer in expression rather than repression. When I have pain I want to feel it. I want to be in relationship with my pain so I know how to work with it and move with it without contributing to the physical and or emotional stressors that might increase the level of discomfort experienced.

Louise was in the final stages of her life when I was asked to see her 3 times a week. That was in October. She died in February.

Louise had no control over her body. She could raise her right arm and turn her head slightly to the right. Sometimes in a session she kept her head in constant movement. Louise was grateful, always said thank you for coming and always greeted me with a smile. I consider her level of trust a precious treasure and often related that to her which seemed to please her.

She was moved from the skilled nursing facility to the hospice in December. Once in the hospice she became quite agitated and began calling out for help and moaning loudly. Of course, how to relieve Louise’s pain was top priority and her discomfort was partly assessed through the degree of vocal expression.

Pain medication would quiet the moaning, however sometimes when I went to see her after being told her comfort had been restored I would find her whispering “help” in a voice that could not be heard. The need to call out was still present. The team was relieved. Louise was quietly resting.

There were also times when Louise would call out that she hurt all over and pain medication subsequently brought her needed relief. Other times she would decline medication and a volunteer holding her hand was the perfect support.

The agitation and vocalizing lasted for about a month. Arnica and Rescue Remedy were introduced as adjuncts to her pain medication to see if that would help the anxiety beyond the pain.

I am reminded of two visits when Louise was yelling out and I told her the nurse would be in to give her medication. ”I don’t want any medication” she said.

Through many of our sessions Louise called out for help and moaned loudly, declining medication and stating she was not in pain. Maybe the moaning was pleasure. Sometimes I’d ask if the touch felt good and she’d say yes. Maybe the moaning was bliss. Sometimes she called out “oh” the entire session.

Once, in the last couple of weeks, I arrived and the volunteer with her said Louise was moaning loudly but she did not want any medication.

This is a human being that was unable to move her body for many years. The only movement she could produce was through her voice. Should her comfort be assessed by the silencing of her voice or by the ability to use her voice?

When are sounds pain and when are they a coping strategy for releasing pain? How fine the line.

“When I die allow my voice to fill the temple and the movement of my limbs to be as wind through the trees. Do not silence or still this passion that has been so responsible. Allow me to participate in this dance with spirit, loose and wild and free. Allow me my process.”

Irene smith

I would love to hear your feed back on this topic.

Blessings,

Irene Smith

www.everflowing.org

Do you feel the texture of the skin when you have a body part in your hand?

Do you pause to feel the bond between you and the other being that you are touching?

Do you ever just exhale and remember the beauty of a single touch?

Are you moving fast, talking while arranging props before a session, or do you realize that your presence is also touching your client?

Do you remember the intimate moments of real contact during a session? Do you recognize them when they are happening?

Can you observe non professionals touching without judging their technique?

The You Tube link below is a trailer of a touch exercise in an Everflowing hospice caregivers workshop. In the exercise one person is clay and the other person is a sculptor. The sculptor is to sculpt the face, head, shoulders, arms and hands of their partner. The dialogue you will hear is not the dialogue for the exercises. It is a dialogue on what touch is.

http://www.youtube.com/user/Everflowingsf?feature=mhum

Click on enjoy

Enjoy!

Blessings,

Irene Smith www.everflowing.org